When an Autism Diagnosis Brings Relief

Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.

Vincent Randazzo explains how his family’s connection with autism runs even deeper.

When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.

Michael has a brother and a sister who would love him and care for him like any other sibling. At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs. We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.

I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation. But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.

Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing. He became less talkative, developed verbal tics, and made eye contact less often. He would obsess about movie videos, ceiling fans, and where we placed his food on the plate. We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children. He didn’t play or interact with his peers the way a typical child with Down syndrome did.

During family vacations or visits with friends and relatives, Michael would be irritable and disruptive. He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground. We were always being told that people with Down syndrome were so lovable and good-natured. Why wasn’t that the case with our son?

Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability. During one medical visit, we were told “so what if he had autism, what difference would it make?” One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.

At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility. We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.

The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.

We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally. After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best. The medicines he took and the way his medical providers approached his care significantly changed. With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.

The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges. In fact, as he has grown older, those challenges have only increased. But the diagnosis has provided relief to our family because we now understand him better. We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them. And I am no longer constantly frustrated and angry with his inability to do simple tasks.

Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.

Totally get what you are saying! Well said Vincent!
The absolute worst is not knowing what is going on. I felt like a horrible parent, a total failure. At least w/ diagnosis you can move forward and DO something. So many people said, “don’t label him!” But I said not labeling him isn’t getting us nowhere. The least of our problems should be embarrassment, we did nothing wrong, there is no reason to hide.Nothing beats the truth. I don’t care about the label but what I can do to help my son.

I am a teacher for special needs children in South Africa and have taught both Downs syndrome children and children with Autism but this is the first time I have heard of a child with both. I would like your opinion though, and maybe those of professionals around you. I teach a downs syndrome 9 year old boy, who although he has fair intelligence and excellent lifeskills, is unable to talk. We have questioned serious apraxia, but he struggles to form any words. Has anyone else had this experience?
belinda Rae

I really like the part about now you know how to plan the social situations and if it gets uncomfortable you can always leave. Life is a process for all of us! God’s Blessings to your family and precious Micheal.

Reading this blog has really raised some concerns. My daughter Jasmine is 7 years old and was diagnoses with trisomy 21. I to have always heard that children with Down’s are very lovable but with Jasmine that is the opposite. She is very aggressive! She like to hurt her siblings and other children. She screams a lot and gets very angry when we make changes. I am wondering if autism is something we should look into also.

As to “so what if he had autism, what difference would it make?” Medical providers need to understand that it doesn’t matter what you label a condition, as long as you know how to best work with your kid. That is the reward of all your effort. Best wishes to you and your family.

So right. Knowing is half the battle, but at least we have some answers. It is so disconcerting when you see your child acting so differently that all the other children with Down’s…Especially hate “Well he has Downs!” I think they mean, “He poops, he eats some, he pees. What else do you want?” I SAY I WANT ALL MY CHILD DESERVES!!! HE DESERVES THE BEST POSSIBLE OPPORTUNITIES FOR A BRIGHTER FUTURE JUST LIKE ANY OTHER CHILD!!!

” I am no longer constantly frustrated and angry with his inability to do simple tasks.”

This comment really hit home for me. My daughter was 17 when diagnosed and I remember feeling this way when she was younger. I planned events, simple things like sledding or riding bikes on a bike trail for all of my children, and she would ultimately have a melt down and ruin everyone’s fun.

I am so grateful for the diagnosis, but astounded at how long it took to arrive here. When a child physically appears “normal”, they are ignored. In your son’s case, if one diagnosis is provided, then any other possibility was
dismissed. Thankfully, you were able to pursue this further and I applaud the teacher who recognized the possibility of Autism. More teachers need to be aware and not judge the child. My daughter was constantly judged, and I was as well by teachers and other adults who assumed that the ADHD diagnosis was just a label or excuse. Thank you for posting this and God Bless your son, Michael and your family!

Thank you for this posting. I have felt so alone for the past four years. Our 6 and a half yr old son was born with Down’s and everyone missed it until five months of age, eventhough I questioned so many things, so many times. All the signs were there. I was told it was all in my head, among other things. Two years later, he had a severe regression within a few weeks of some shots. He went into “la,la, land.” His pediatrician gave him the DX of Autism because of so many signs. Then the powers that be changed the law. They are not qualified to DX Autism. I waited 9 months to get on a waiting list for an eval. Then was told he did not qualify to be evaluated for Autism because he has Down’s. More fighting…I lost! Started school in a class with all chidren with Autism, various levels, most non-verbal. Sammy wants to communicate so badly. He tries to say things. He has serious feeding issues-I’ve tried everything. I am now happy that he likes Dominoes Pizza and Mc’D’s fish. Not so sweet now. Constantly hitting and kicking. More time out, which is a punishment for me, the last month thatn the last 6 years. Have experienced the difference in social situations with other Down’s children. He has always been different. Thank you for letting us know that we are not alone. This encourages me to push for an evaluation. Thank you.

My child who will be 7 in April is Autistic (although not formally diagnosed, as her Mommy I have been doing alot of research can tell) and was born with Down Syndrome. She can read, Teachers have difficulties figuring out her strategies and are always impresses with the words she is able to match pictures to (national parks and monuments etc.) What is perplexing is that she will hug people and smile, and then run… as though the gesture is a way to distract so she can make an escape. She can’t handle parties, crowds, she prefers to play alone and rarely cuddles until time to sleep. She can almost say Elmo, and for Mommy she says ah, ee. Her portable DVD player makes life outside the home doable!!

I commend you on how you learnned how to understand and work with him. I to have an autistic grandson 12 and a 3 month granddaughter with downs. I love them dearly they are the most important people in my life. I also have another grandson 6 who is a smart guy like his brother, and there are some difficult days in there too. Keep up the super work with Michael, keep posting any more news.